I was born with Sturge Weber Syndrome with a large portwine stain birthmark covering the left side of my head and neck. Lots of extra blood vessels resulted in glaucoma and visible differences in my left eye. Due to the extra blood flow, like many with SWS, at 10 months I began to have seizures with no signs of stopping. Finally After trying everything, at 18 months I had major brain surgery. They had planned on a hemispherectomy but instead were able to locate the affected area and had a piece of my occipital lobe removed. Some vision was lost in the process but I’ve been medication and seizure-free since.
Growing up was a struggle as I never really fit in. My nickname from the bullies was ‘Two-face’ and I was defeated quickly in school. Small town didn’t help as I felt hindered and an outcast. I tried laser treatments young but found them too painful to do awake. I tried the numbing creams but it made no difference so I had to stop. I went through phases of wearing incredibly thick makeup but it didn’t make me feel any better about myself or helped with the social awkwardness. At 16 I began laser treatments again as I found a hospital able I do the procedure with an anesthetic.
After graduation I moved to a small city being optimistic about new surroundings. The laser continued until I was 21 but reality hit me hard. Why did I need to go through the pain, the anesthetic issues the aftercare? Why go through all this to make ‘normal’ people like me? Accept me? Why hide behind a mask of makeup? My husband, but boyfriend then also adored me for me. He saw me for who I was on the inside not what I looked like.
I decided then not to seek further treatment, not to hide behind makeup and to this day I live by that. I’ve struggled even now as an adult with being different. From not getting jobs because of how I look to still being segregated in social situations or never really having that close friend. Thankfully I have my husband who is my best friend as I’ve never really had anyone there for me.
I feel like a monster sometimes, but my blessings are my two daughters. One is pre-teen the other a toddler but they both know I’m different and love me dearly. When stopped and asked I always take the time to explain my condition. I remember taking my oldest to school and her classmates whispering and pointing but she would answer their questions as diplomatically as I do
Recently I’ve begun to connect with other adults through social media and it’s been incredibly meeting new people, hearing their similar stories, and knowing there are others. I joke now and say that my birthmark was really my first tattoo that fate designed for me.